Monday, June 29, 2009

All right POTSies...here are some of my tricks (or ones I've heard are helpful) for combating dysautonomia aka Postural Orthostatic Tachycardia Syndrome. Again, none of this should be considered medical advice. Ask your doctor before changing your salt intake or adding the therapies listed below. These are for educational purposes only.

SALT: It's the opposite of what we've been told our whole lives...that salt is bad for you. Well, not for us. We are prescribed by our doctors 5000-10000mg of salt a day!! Believe it or not, I had been placed on a LOW salt diet before my diagnosis...no wonder I got so sick! So, get used to everything you eat tasting like a salt block. Add salt to everything and liberally if you have POTS. Unfortunately, if you're one of us that have severe acid reflux symptoms, that can be exacerbated by too much salt, so you'll have to have the maximum amount you can stomach without causing severe GERD symptoms. Many of the fluids listed below also have a significant amount of salt in them, so they can help in this category as well. Many people try Thermotabs aka salt tablets, but I think that they are created to torture us! I took a couple of them, and found them to be painful, nausea inducing, and then didn't help at all. If you enjoy suffering, then definitely try them...:)

Fluids: You have to keep your fluid volume high and, to do that, you need to drink LOTS of fluids. Here are some of the ones that I have found to be helpful.

Pedialyte: my personal favorite for fighting dehydration. I find that when my symptoms are really bad, having a liter of pedialyte makes me feel worlds better, which the others can't seem to do. I highly recommend. You might want to try the plain flavor, but if you can't stomach it by itself, then try adding just a TINY bit of a crystal light packet to it to make it more palatable.

Ceralyte: nice for travel b/c it is in packet form and can be mixed with water wherever you are. Like all of the electrolyte mixes, it has to be used quickly. It is not the greatest tasting stuff (made from rice and tastes like it) but is great for freezing into ice cubes and adding to smoothies later or if you need electrolyte help when traveling.

Gatorade: super easy to get and cheap, but super high sugar content and doesn't seem to work as well for me as the other mixes. If you don't mind drinking gallons of the stuff, then it is probably helpful, but I tend to have it only occasionally because it is so sweet and not as effective for me. The same goes for powerade and similar drinks (although I haven't tried propel).

Water (of course): I drink close to 3 L a day of the stuff and (literally) can't live without it. It is a requirement for all of us. Some people say that 2 L is adequate, but each person has to do what feels best for them. Carry it or another liquid with you at all times and if a major attack of POTS is coming on, down about 16oz fast and that might help stem the tide.

Homemade Electrolyte Mix: 1 qt water, 2 Tbsp honey, 1/4 tsp salt, 1/4 tsp baking soda. Combine until dissolved. Will last in fridge up to 24 hrs only. Great if you're in a pinch and dehydrated. Doesn't taste as good as some of the name brands, but not bad.

Countermaneuvers: I find it helpful to cross your legs or flex your thigh and calf muscles while standing if you are having an increase in symptoms, to lean forward onto a surface, or to walk in place. Others listed by dinet.org include sitting in a low chair, sitting in the knee to chest position and leaning forward with your hands on your knees when sitting and tightening the buttocks. These may increase the amount of time that you can remain upright, but they are usually only temporarily helpful.

Compression stockings: These can be really helpful for a lot of POTSies by combating the pooling of blood that can take place in the legs. 30-40mm Hg compression is usually needed to see any results and often need to be waist high; these can be prescribed by your doctor.

Pace yourself: Pacing is extremely important to prevent exhausting yourself for several days after a period of activity. By doing small amounts at a time, and frequently resting, you can prevent or reduce the number of days that you are super sick and unable to move. There is a good summary of how to pace yourself (this one is for fibromyalgia and CFS, but the principles are the same) at about.com that is worth checking out.

Frequent small meals: Large meals can cause too much blood to be diverted to the abdomen, and can increase symptoms in many people with dysautonomia; so, eating frequent small meals can help prevent these symptoms, and also helps to keep blood glucose levels stable throughout the day to increase energy.

Elevating the head of the bed: Doctors frequently recommend elevating your head at least 6 inches because it can help increase overall blood volume; It can also help with the frequent GERD that many of us deal with daily.

Exercise: even small amounts of exercise can make a difference (I know how hard this can be). Try not to allow yourself to get overly debilitated by staying in bed. It's very important to get up frequently, even for short periods just to keep your body at work. Many people find that exercising for 5 min increments each day makes a significant difference in how they feel. Resistance training, especially of the legs, can also be helpful over time.

Sitting in the shower: try using a shower seat when taking a shower...it can help reduce the risk or feeling that you are going to faint. And I can tell you from personal experience that it is NOT fun to faint in the shower! Also, taking a lukewarm shower can help reduce dizziness and lightheaded-ness during the shower.

I'm sure that I have managed to miss a bunch of helpful techniques, but this should at least be a good starting point. If I think of more things, I will add them to the blog in the future. If I've missed any helpful techniques, please comment on this post so that everyone can benefit from your discovery. Good luck to all of you in managing your POTS! :)

10 comments:

Thanks! This was really great. I didn't realize there were a lot of other people with POTS who also have bad acid reflux. That has been the main reason why I had to do the meds. Too much salt makes me feel really nauseous. Compression hose are really great, but also difficult because of pressure on my stomach. Still learning what things work! Thanks for your post! - Pam in San Francisco

Thanks for all the tips. I'd have to add that I've found Lemon Ginger Tea by Yogi to be helpful also. I also add in a 1/4 tsp of ginger spice to it and it seems to help my circulation some. Blessings :)

Thank you for taking the time to write out your experiences with dysautonomia...very helpful. I have been experiencing symptoms for over 30 years and I am just coming out of another relapse. One treament I have found helpful is taking vitamin B2 200mgs twice per day. My migraines and visual disturbances have been reduced significantly after taking this.Best of luck!

Great, great, great blog!! Thank you for posting this. Most of these things don't help, but they are all on my list of things to do anyway! Gotta love the granny stockings and the shower chair! :) Hope you have a great day and feel like smiling! :) (my blog is DanielleDavisEDS.blogspot.com - I have EDS type 3 and POTS - keep in touch!) xo dani

*by 'don't help,' i meant i have been doing all of them but they just don't work that well for me personally (POTS officially diagnosed in 2008, had since I was a teenager, symptoms varied, but progressed to debilitating over the last 2 years) - though, i am all about natural remedies and holistic medicine, and i continue to hope that one day these will be enough to get me through the day - after all, they are all i have to work with!

Hi! I read on facebook that you and others are funding research on pots/dysautonomia. I have just started grad school at UNC and was told almost two years ago that I had pots. But then I was dismissed.

Do you know of any doctors good with pots or pots research happening right now in UNC? That would be a great resource for me to use. I looked online to no avail.

Hi C, if you want to email me at lmbutare@wheredidigetthislemon.com, we can talk in detail about POTS in the triangle area. My POTS doc is actually not with UNC and would be my #1 rec: Dr. Sameh Mobarek with Wake Heart. I have also heard that Dr. Klein at UNC is good (she is a neurologist)so you could try her as well. Feel free to email me so I can give you more details, etc.

Healthline just published a visualization of your daily value of sodium. In the chart, you can see what half of your DV of salt looks like for 30 foods: http://www.healthline.com/health/high-blood-pressure-hypertension/daily-value-sodium

This is very valuable content as it puts nutrition information into perspective and helps a person understand how much sodium is actually in their food. I thought this would be of interest to your audience and wanted to see if you would include this as a resource on your page: http://wheredidigetthislemon.blogspot.com/2009/06/anti-dysautonomia-non-pharmaceutical.html

If you do not believe this would be a good fit for a resource on your site, even sharing this on your social communities would be a great alternativeto help get the word out.

Thanks for your time reviewing. Please let me know your thoughts and if there are any questions I can answer.

Why am I doing this?

I have been severely ill for 8 years. I was an active, healthy 26 year old emergency veterinarian loving life and my job. Everything crashed to a halt after a cat bite landed me in the hospital for a few days on IV antibiotics. Severe dizziness, fatigue, pain, and fainting were soon to follow. I had to take medical leave 3 months after I first became ill and was never able to work again.

It took more than 30 doctors, 2 years, and a trip to the Mayo clinic in Minnesota to finally get diagnosed with Postural Orthostatic Tachycardia Syndrome, or "POTS", a type of dysautonomia. I am still severely disabled, but fighting tooth and nail to get better every day. I want this blog to be a resource for others who have chronic "mystery" diagnoses or other chronic disorders that need help organizing their life again.

Bear with me on this blog because I am ill and will not be able to post as regularly as a "normal" person can!